TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘TBI Caregiver’

Sneak Peeks for Prisoners

My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company.  Here are pre-order links for Amazon, Barnes & Noble, and IndieBound.

Excerpt 6

Chapter 15

Emotional Roller-coaster

presented by

Donna O’Donnell Figurski

nurse-clipart-2645bff0709e4cf23bcaff6690965816-1… A few days later, on January 26th, David gave his night nurse a scare, which in turn frightened me. When David’s night nurse Melody checked on David in the middle of the night, she found him sitting up in bed. That’s not so scary, except that David had no control over his body. He was unable to move, and his muscles were slack, but somehow he had found the bed controls that raise and lower the sick-clipart-sick-person-12mattress and fiddled with them enough to bring his upper mattress to a dangerously high, perpendicular position. He was seated precariously upright—nearly flopping over like a Raggedy Andy doll.

When Melody, whom I absolutely adored, told me of the incident the next morning, I detected a barely perceptible grin on David’s face. He had enjoyed his unwitting prank …

 

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Sneak Peeks for Prisoners

My book, Prisoners without Bars: a caregiver’s tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company. Here are pre-order links for Amazon, Barnes & Noble, and IndieBound.

Excerpt 5

Chapter 19

Befriending the Staff

presented by

Donna O’Donnell Figurski

hospital-clipart-hospital3

… Who would have thought that Radburn would become home? When we arrived on the evening of February 7th, my life was vague. Unlike my normal structured life, hospital life caused me to become disoriented. I didn’t know what to expect from moment to moment … This new life was abnormal-crazy. I lived thday to day, and nothing seemed real. My familiar routine was gone, and my life was as upended as David’s was. Life swirled around me, but I didn’t feel it. I floundered in a fog. When we arrived at Radburn, I never dreamed that we would spend the next two months of our lives there. I had no idea what our time frame would be. Nobody did …

 

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Caregivers SPEAK OUT! . . . . Carol . . . (for her husband, Andy)

Caregivers SPEAK OUT!

Carol (caregiver for her husband, Andy)

presented by

Donna O’Donnell Figurski

 

Carol1. What is your name? (last name optional)

Carol

2. Where do you live? (city and/or state and/or country) Email? (optional)

Toronto, Ontario, Canada

3. What is the brain-injury survivor’s relationship to you? How old was the survivor when he/she had the brain injury? What caused your survivor’s brain injury?

Andy is my spouse. He was 53. He was in a motorcycle accident on his way to work.th

4. On what date did you begin care for your brain-injury survivor? Were you the main caregiver? Are you now? How old were you when you began care?

I began care the day of the accident. I was in the hospital every day for eight to ten hours waiting for Andy to wake up. We finally came home after five months. I became his full-time caregiver, and I still am. I was 50; I just turned 52.

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No

6. Were you employed at the time of your survivor’s brain injury? If so, were you able to continue working?

Yes. I was working full-time, but I resigned after the accident.

7. Did you have any help? If so, what kind and for how long?

We were lucky to have a full team of therapists. But, we had no support-workers because Andy felt that the people were invading his privacy.

8. When did your support of the survivor begin (e.g., immediately – in the hospital; when the survivor returned home; etc.)?

Immediately. I was in the hospital every day to give my husband moral support and the healing effect of touch.

9. Was your survivor in a coma? If so, what did you do during that time?

My husband’s coma was induced. I was in the ICU (intensive care unit) with him all day. Holding his hands. Playing his music.e799afda1f4dee4bd0c8c6e0606325b1

10. Did your survivor have rehab? If so, what kind of rehab (i.e., inpatient and/or outpatient and occupational, physical, speech, and/or other)? How long was the rehab? Where were you when your survivor was getting therapy?

My husband was admitted to rehab for almost three months. It was exceptionally long. But, he was not in a position to benefit from all the therapies. He suffered from seizures, and the medication made him tired. He slept most of the days. I was at rehab with him all day. I tiptoed out for coffee breaks, but I didn’t go far.

11. What problems or disabilities of your brain-injury survivor required your care, if any?

I help with Andy’s problems with gait, balance, cognitive functions, memory, and emotional lability (involuntary, sometimes inappropriate, emotional displays of mood, which are overly rapid and exaggerated). I take care of meals, finances, housekeeping, and Andy’s soiled beddings. After continuing physio three times a week, Andy found that his gait and balance improved. The problem with his urinary tract got better on its own. I still accompany him to all his therapy sessions because of his memory problem.

12. How has your life changed since you became a caregiver? Is it better? Is it worse?

Life has become simpler. No running after unnecessary things. This gave me the chance to notice more, and I realized that there all lots of kind and helpful people around the community. Our roles changed – I have to deal with the house and finances.

13. What do you miss the most from pre-brain-injury life?hotel-clipart-transparent-background-4.png

We travel together two or three times a year. Andy was the one who used to plan and book the trips and accommodations. I miss him sharing his ideas about everything.

14. What do you enjoy most in post-brain-injury life?

Being with him. Seeing the progress every day. Listening to his fears and seeing him happy.

15. What do you like least about brain injury?

A lot of people are not aware of TBI (traumatic brain injury). I myself never heard of it until my husband was diagnosed as having a TBI. It has drastically changed his life. I have to deal with all the house work and repairs. I have to make the final decisions.

16. Has anything helped you to accept your survivor’s brain injury?

Yes. Andy used to tell me that there are no regrets in life. Everything is done through our own decisions. We cannot say “What if … ?”No Excuses

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes. My role is now changed. My two children and I miss Andy’s ideas, suggestions, and guidance.

18. Has your social life been altered or changed and, if so, how?

Yes. I have become overprotective. I don’t want to leave my husband alone. My friends are all working, so not only is there no time to meet, but it’s also not easy for me to leave the house without him.

volunteers19. What are your plans? What do you expect/hope to be doing ten years from now?

I would love to volunteer and help other people.

20. What advice would you offer other caregivers of brain-injury survivors? Do you have any other comments that you would like to add?

Be patient; time heals. It’s a learning process to both the survivor and the caregiver. And, it’s absolutely worthwhile! It changed my perspectives in life.

 

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As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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SPEAK OUT! . . . . . . . . . . . . . . Itty-Bitty GIANT Steps

SPEAK OUT! Itty-Bitty GIANT Steps

Itty-Bitty GIant Steps for Blog

 

 

SPEAK OUT! Itty-Bitty Giant Steps will provide a venue for brain-injury survivors and caregivers to shout out their accomplishments of the week.

If you have an Itty-Bitty Giant Step and you would like to share it, just send an email to me at donnaodonnellfigurski@gmail.com.

If you are on Facebook, you can simply send a Private Message to me. It need only be a sentence or two. I’ll gather the accomplishments and post them with your name on my blog approximately once a week. (If you do not want your last name to be posted, please tell me in your email or Private Message.)

I hope we have millions of Itty-Bitty Giant Steps.

Heather Sivori Floyd & TJ

Brain Injury Survivor, TJ and Mom, Heather Sivori Floyd

Heather Sivori Floyd (caregiver for her son, TJ) … TJ was finally able to get out of the bath on his own! We will always celebrate the little, yet big, milestones because they matter. It matters simply because these moments are the reasons to keep going when it’s very hard. (Keep it up, buddy! You’ll hit those goals because you are determined.) So very proud of him and his never-ending drive to keep going.

Heather Sivori Floyd

Heather Sivori Floyd – Caregiver for son, TJ

 

YOU did it!

Congrats to TJ!

 

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(Photos compliments of contributor.)

As I say after each post:anim0014-1_e0-1

Please leave a comment by clicking the blue words “Leave a Comment” below this post.

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Survivors SPEAK OUT! . . . Gage Mabry

Survivors SPEAK OUT! Gage Mabry

presented by

Donna O’Donnell Figurski

 

Gage Mabry 1

Gage Mabry – survivor of brain injury

1. What is your name? (last name optional)

Gage Mabry

2. Where do you live? (city and/or state and/or country) Email (optional)

Missouri, USA

3. On what date did you have your brain injury? At what age?

October 24, 2015  I was 20 years old.

4. How did your brain injury occur?

I was working, and a fifteen-pound scanner fell from a twelve-foot ladder overhead. It landed on top of my head.

5. When did you (or someone) first realize you had a problem?

Immediately. I knew that I took a good hit to the head. It was like being a cartoon character in a slow-moving cartoon.

6. What kind of emergency treatment, if any, did you have?

There was no emergency-care immediately after the accident. I continued to work the rest of my shift. I was disoriented, my vision was blurry, and I developed a massive headache. It wasn’t until my mom tried to wake me up that we realized there was a problem.1304_Symptom_12

7. Were you in a coma? If so, how long?

No

8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?

I was sent to a company doctor, who at first diagnosed my injury as a concussion. When my symptoms continued to persist and worsen over the next few weeks, the company sent me to have a CT (“cat”; computerized tomography) scan, which showed no abnormalities. Over the next three months of “rest,” my symptoms continued, and new ones developed. So now, my brain injury was diagnosed as Post-Concussion Syndrome. I was sent for neurological testing, which showed deficiencies in brain function. I was then referred for further treatments to involve pain management, balance therapy, and counseling. But, due to the situation, I never received any treatment other than what my family could try and provide. Now after two years and an independent medical exam, I’ve been diagnosed as having “Diffuse TBI” (traumatic brain injury).

9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?

headacheI have severe migraines that last for days, photophobia, sensitivities to loud sounds and to certain smells, and balance issues. I also have issues with depression, anxiety, anger, and fatigue that are so bad that I can’t even function some days.

10. How has your life changed? Is it better? Is it worse?

This is a hard one. My old life is gone, but my new one is filled with good and bad … it’s a work in progress!

11. What do you miss the most from your pre-brain-injury life?

Activities I used to do; my friends.

12. What do you enjoy most in your post-brain-injury life?

All the possibilities

Gage Mabry 2

Gage Mabry – Brain Injury Survivor

13. What do you like least about your brain injury?

The headaches

14. Has anything helped you to accept your brain injury?

My mom!

15. Has your injury affected your home life and relationships and, if so, how?

This has been a roller-coaster ride. It has devastated my family financially, but it has brought us together – with more love and support for each other that we had before. My friends and girlfriend have their lives to live, and I just wasn’t part of their plans anymore.

16. Has your social life been altered or changed and, if so, how?

This difference has been the hardest for me to accept. I went from being a popular, outgoing, and athletic person to a withdrawn, angry, and depressed person overnight. Social anxiety has been the hardest things to try and overcome, but I’m doing it day by day. Finding humor in that anxious setting has been the best medicine ever! I explain it to people as an “EMP” … electrical magnetic pulse … when I can’t remember my left from my right or forget how to speak. It eases the tension.

Mabry, Darlene Watson Caregiver

Darlene Watson Mabry – Caregiver

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My MOM! And, yes, it has been so hard for her. I don’t know how she does it. She’s a

superhero to me!

18. What are your plans? What do you expect/hope to be doing ten years from now?

I still have my dreams that I will fulfill. They have just been altered. Instead of a “Game Designer” … it’s a “Game Broadcaster”; my physical-fitness regimens have been modified to walking instead of running. “Compromise” is what my mom calls it!

19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.

You may have setbacks, but that doesn’t mean the game is over!

20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Never give up – regardless of how bad it gets – because you belong to a special group now … you are a Survivor!

 

Gage’s mother wrote a moving “Faces of Brain Injury”  Click to read

Please leave a comment/question. I will respond.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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Sneak Peeks for Prisoners

My book, Prisoners without Bars: A Caregiver’s Tale, will be released to the public on November 1, 2018 by WriteLife Publishing of Boutique of Quality Books Publishing Company. Here are pre-order links for Barnes & Noble and Amazon.

Excerpt 4

Chapter 4

Unthinkable Odds

presented by

Donna O’Donnell Figurski

Crazed Woman

… I must have looked like a zombie. I stood mute, wringing my hands, breathing out and in and out again. I didn’t know what to do. I felt paralyzed. Brain SurgeonMy permission was needed to operate on my husband’s brain. How could I give it? How could I allow Dr. Hulda to ­work on my husband’s beautiful, smart brain? …

 

Please leave a comment/question. I will respond.

(Clip Art compliments of Bing.)

As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

Please follow my blog. Click on “Follow” on the upper right sidebar.

If you like my blog, share it (intact) with your friends. It’s easy! Click the “Share” buttons below.

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TBI Tales . . . . . . . . . . . . . . . Knitting through the Honeymoon

Knitting through the Honeymoon

by Liza Spears

presented

by

Donna O’Donnell Figurski

 

bride-and-groom-clipart-14I’ve been married for almost seven months. Since my wedding, I’ve knit twenty-five hats, five sweaters, three scarves, and one blanket.

I started my first “married life” knitting project on the third day of my honeymoon. It was a ribbed seed stitch hat in my wedding colors–deep reds and purples. I pretended that it was for my husband, even though I knew there was way no he’d wear such a feminine pattern.Liza Spears Wedding Photo

I started the hat over more times than I can count. I didn’t start over because of any mistakes–I hadn’t dropped a stitch or miscounted any rows. The pattern wasn’t complex. I just knew each time I finished that it wasn’t quite right. Every time I got to the last row of the hat, I’d finish as instructed–threading the yarn through the remaining stitches and pulling it tight. Instead of weaving in the ends, though, I’d just completely undo the whole thing and start from the beginning.

I knew how to knit before I got married, but I never trusted myself to do anythingclipart-knitting-DP2n1R-clipart more complex than a simple hat, knit in the round, just knit, purl, knit, purl. I’m happy to say that out of the twenty-five hats I’ve knit since my wedding day, not a single one is that old favorite of mine. Before the wedding, I avoided new patterns because I avoided counting as much as possible. How could an activity be fun if it involved math?

Liza Spears 062418

Liza Spears – Knitter Extraordinaire

It was that third day of my honeymoon and that brand-new hat pattern that taught me how much I needed to count stitches. I learned that if I was counting stitches, I wasn’t counting other things, like the number of the days my husband had been in the ICU (intensive care unit) or the number of nurses that cried when they saw me. If I focused on the 44 stitches I had to cast on to a pair of size 11 needles, I might not notice that his ICP (intracranial pressure) levels* kept creeping up. The number 44 isn’t so scary when it’s just the number of stitches in a row, but when it’s the number flashing on your husband’s monitor next to “ICP” as one of his nurses ushers you out and three doctors rush in, it is scary.

I wasn’t supposed to have time to knit on my honeymoon. I was supposed to be rappelling down waterfalls in the Azores and soaking in thermal baths, but you can’t do that when you wake up in the middle of your wedding night to the sound of your husband falling down the stairs. Going to the bathroom should be easy. It shouldn’t end with your husband lying in pool of his own blood. The first time you use the phrase “my husband” shouldn’t be when calling 911, and as much as you love your bridesmaid, she isn’t the person you should be sharing your bed with. I wasn’t supposed to spend the third day of my honeymoon in the waiting room of the ICU sobbing with my mom, not understanding why my husband wasn’t awake, and what it meant that his nurse had kicked me out.

In the waiting room, I just focused on the ribbing of the hat. Knit 3. Purl 2. Repeat. I was already switching to larger needles to begin the rest of the hat when my husband’s nurse came out and told me I should say goodnight. The pressures in my husband’s brain were just too high for any extra stimulation, even if I just sat next him counting my knits and purls.

The hospital called me at 4 am the next morning to tell me that they were rushing my husband in for an emergency decompressive craniotomy. They could no longer control the rising pressure in his brain with medication alone, so they removed half of his skull.

I realized I’d have to adjust my hat pattern if it was going to fit my husband’s new head, so I started over, knitting and counting the stitches until he woke up.

*Intracranial pressure levels between 7 and 15 are normal. Levels above 20 are dangerous and indicate brain swelling.

To read more posts by Liza Spears, click on Knit Neutrality.

(Disclaimer: The views or opinions in this post are solely that of the author.)

If you have a story to share and would like to be a part of the SPEAK OUT! project, please submit your TBI Tale to me at neelyf@aol.com. I will publish as many stories as I can.

 

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Please leave a comment by clicking the blue words “Leave a Comment” below this post.anim0014-1_e0-1

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